I’ll take one Apraxia handbook, please!

My husband would refer to me as a “recipe follower”. As odd as the description is, it sums me up pretty well. I follow recipes down to the 1/8 teaspoon of pepper. If my awesome cook of a mother saw a recipe that called for 1/8 teaspoon pepper, she would toss some pepper in her palm, and throw it in the bowl. When I see it however, I get out my nifty little 1/8 teaspoon for measuring, poor the pepper in and slide a knife across the top. Yep. That’s me. In a nutshell. Don’t get me started on recipes that call for a “dash” of something. What does that even mean? I’ll just “dash” my way back to the cookbook and find a recipe that isn’t speaking nonsense.

Every few months my husband will challenge me, “Ok babe, how about tonight you try cooking without any measuring cups…Ohhhh snap!”. He thinks he’s funny, so I’ve humored him back and tried it a couple times. Just the act of it made me uncomfortable, but it doesn’t stop there. When we are sitting down to eat our meal of unmeasured ingredients, I’ve already convinced myself that it’s ruined. What if I had followed the recipe? What would it taste like? What would it look like? After all, recipes are there for a reason, right? They are there to say, “Oh you want Chicken Parmigiana tonight? Well here’s EXACTLY how to get it. You’re welcome.” It’s a beautiful thing!

So there you have it, I am a “recipe follower”, that has a child with Apraxia. What does being a “recipe follower” have to do with Apraxia, you ask? Let me explain.

As Gia was receiving her diagnosis I, like all Apraxia parents, wanted to know what was next. Tell me what to do and I’ll do it. Just lay it all out and I’m on board. Please just tell me how to fix this. You leave the therapists office with your plan of action, and a whole lot of hope. But wait, you forgot to give me my handbook! Oh that’s ok, I’ll just do a little research online, find my trusty little Apraxia handbook, it will tell me EXACTLY how to fix this, and voila! So I researched, and nothing. Researched again, still nothing. Not one Apraxia handbook, not one recipe for the perfect Apraxia stew, not one instructional guide to the fastest Apraxia resolve, and not one set of directions to an Apraxia-free life. Nothing. Doesn’t Apraxia know the value of a good old-fashioned, step-by-step recipe?!

So here I am 7 months later, and still no handbook. As anxiety-provoking as it was, I had no choice but to accept that I would never find my black and white answer to Apraxia, and I would be living in the gray for years to come. This was nothing that my measuring cups could fix. Every child’s Apraxia recipe is different, and I had to depend on a team of people to help me create Gia’s. The reality is, the recipe changes – sometimes daily! Miss Anna-Alyse may have a plan for Gia’s session that I like to believe looks something like this…

4 year-olds think about two things: playing and sugar. Having a 4 year-old in this much therapy is not normal. It’s a constant balancing act of getting in as much therapy as we can in the hopes of quicker results, and not working her too hard with the fear of overwhelming her to point of regression. There’s this voice in your head that one week is saying, “She’s exhausted, maybe I need to cut back on therapy.”, and the next week is saying, “She’s doing awesome! Let’s add two more days of therapy!” It could drive you insane!

I recently went through a bit of a “funk”, where I had a nagging feeling that I needed to change something about Gia’s Apraxia recipe; both at home and at therapy. On the home front, we are testing out the new Speech E-Z Apraxia Program App (this is exciting!), we are cutting back on her sugar intake (this should be fun!), and we are starting Gia on a daily routine of fish oil, choline, and probiotics (yay for research!). On the therapy front, I had a much needed meeting with one of Gia’s PATIENT SLP’s, Anna-Alyse. Our meeting turned in to a counseling session, that in the end helped me make a decision I had pondered over for weeks. So I added another day of Speech, and decided to try some Music therapy once a week to top it off. So yes, overnight I added two more hours of therapy a week to Gia’s recipe, and I feel good about it! My gut was telling me she could handle more and needed more, so I listened to it. If it’s all too much for Gia, then I’m only a few steps away from the simple solution: First, my gut will tell me, then I’ll obsess about it, then I’ll have Anna-Alyse make me feel better, then I’ll just change the recipe again. Simple!

Having no control over something as life-changing as Apraxia has been a tough pill to swallow. I had to go through many sleepless nights and nail-biting sessions to finally swallow that square-shaped pill. I have my ups and downs, my days that Apraxia and I just aren’t seeing eye to eye. I can promise you I will have these days until the last minute of Gia’s last therapy session, and probably even after. Apraxia goes against everything that I am – it’s my dash of salt. I like instructions, I like directions, and I really, really like recipes! Gia and her clingy little sidekick, Apraxia are going to teach me a thing or two about life – let go, have faith and trust.

Gia is currently working toward mastering her 3-word sentences. With that being said, there are very few phrases she can use intelligibly that have more than 3 words. I’m going to leave you with one of them…

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10 thoughts on “I’ll take one Apraxia handbook, please!”

Such a cute interpretation of apraxia! Yes, if only there was a recipe. I am feeling this big time with Jake’s newest allergy puzzle piece. So much of apraxia, etc. is left up to the mom to figure out and some days that’s well and good, but other days it is exhausting! I also love that cartoon you used! ha, ha … It reminds me of a quote I’ve got hanging up in my office … “I am extraordinarily patient, provided I get my own way in the end.” 🙂 Hope you are well. I have my blog calendar made out through August. I would love for you to guest write for me in early September.

You truly understand, Tori! The quote you have up in your office could not be more perfect lol! Poor Jake and his allergies…Ugh! We are about to get Gia’s retested, and hoping there’s some she may have grown out of. Not counting on it though! Early September sounds great! Let me know and stay in touch :). Thanks, Tori!

Sheila, you are Gia’s miracle worker, like Ann Bancroft in “The Miracle Worker” . You are incredible and so admirable! Keep up the great work with Gia-these things you are both learning require the freedom from a fixed recipe-this is the recipe and you are tremendous!!! I love you both! Xoxo

Your posts always leave me feeling so inspired. And I always seem to get a little teary eyed! Thank you for sharing this journey with us….your strength, determination and love for your family is truly inspirational!

Just discovered your blog and have really enjoyed reading it. We’ve just started a CAS journey with our 2 year old son. Will continue to read with interest all the way from Australia. Wishing both our little ones great progress xx

Thank you for reading! With a two year-old, you really are at just the beginning, so I know exactly what you’re feeling right now. I promise you there is so much hope for these kids, and they do get better! Your little guy will do great :). I’ll be posting soon about alternatives ways that I’m helping my daughter, as I believe there is so much more we can do for them than many of us realize. Please feel free to contact me anytime with questions. Good luck! sheilatufano@gmail.com

Just discovered your blog and finding it very comforting all the way over in Australia as we’ve recently started a CAS journey with our 2 year old son and local resources are quite rare. Will continue to read with interest and wish fantastic progress for our little ones xx

By the grace of God and my up all night mom worrying, I have stumbled upon your blog at 12:05 am EST. My little girl also has CAS. Thank you for sharing your story. It is so comforting to read other’s experiences. Please keep writing and I will keep reading.